An Inspirational Story Of A Family’s Fight With Chronic Pain

An Inspirational Story Of A Family’s Fight With Chronic Pain

It is widely reported that chronic pain affects nearly 100 million people in the U.S. annually – more than diabetes, heart disease, and cancer combined. While this figure is high, it is still not quite accurate. Chronic pain affects more than just the patient – millions more are affected by the chronic pain of a friend or a loved one. In a recent New York Post article, one family chronicled their ongoing journey through chronic pain with their daughter, Veronica. Watching a child suffer from chronic pain is an experience that can be devastating to a family. Veronica’s family goal is to share their story of struggle, inspiration, and hope for the future.

Meet Veronica and learn about her struggle with chronic pain

In 2015, Veronica Malkin found herself suddenly unable to breathe and completely bedridden. Previously healthy and active, Veronica began to suffer from physical and neurological symptoms that left her with “air hunger,” fatigue and pain.

When she was diagnosed with Tourette’s syndrome, her family hoped that treatment for that condition would bring her back, but when Veronica returned to school part-time she was unable to make it through the day, suffering from extreme fatigue, pain, brain fog, and weight loss.

When Veronica left school, exhausted and in pain, her friends and social support system evaporated. Undiagnosed and still suffering, Veronica began to spiral into isolation and depression. A common feature of chronic pain is how others react to it, saying things like “But you don’t look sick” or “It’s all in your head.”

As Veronica’s friends disappeared one by one, her depression deepened. Her family began to lose hope of finding answers.

The Mayo Clinic provides hope

Just as they began to lose hope, Veronica’s family found The Mayo Clinic and their Pediatric Pain Rehabilitation Center in Rochester, Minnesota. This three-week program runs specifically for adolescents and young adults suffering from chronic pain. It uses cognitive-behavioral therapy, physical therapy, occupational therapy, and recreational therapy to help young adults and their families cope with all aspects of chronic pain and illness.

At The Mayo Clinic, Veronica was eventually diagnosed with multiple chronic illnesses, including:

Dysautonomia: This is a catch-all term for many different conditions that disrupt the regular functioning of the autonomic nervous system (ANS). The ANS regulates reflexive actions in the body such as heart rate, blood pressure, digestion, dilation, and constriction of the pupils of the eye, kidney function, and temperature control. An estimated 70 million people in the world live with this condition.

Postural orthostatic tachycardia syndrome (POTS): Approximately 1% of teens in the U.S. are affected by this condition that can cause lightheadedness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, and temperature sensitivity. It seems to affect girls more than boys.

Pain-amplification syndrome: A condition of the nervous system, pain amplification syndrome causes a heightened sensitivity to stimuli. This causes the body to process normal stimuli (such as a light touch) as extraordinarily painful.

Any one of these conditions alone would be difficult, but to have all three in combination requires more than just a pill to treat. The Mayo Clinic’s combination of mental and physical therapy and focus on moving forward helped Veronica and her family to develop the tools they needed to thrive in daily life. Meeting others suffering in the same way allowed Veronica to see that she truly was not alone in her struggle.

Returning to school, empowered by what she had learned, Veronica received support from school counselors and the new friends made as an athletic trainer. While daily life can still be a struggle, Veronica and her family fought hard to get their lives back and are winning that battle.

What works for chronic pain

What worked here was not magic. What worked here was coordinated care, loving support from family and friends who understand what Veronica is going through, and hard work by Veronica herself. Children and young people and their families have a particularly difficult time coping with chronic pain for a wide variety of reasons.

1. No easy pharmaceutical interventions

Medications may be only one part of a pain management plan, but they are usually not tested on children. Dosing recommendations and listed side effects are based on extrapolations from adult dosing and side effects. For this reason, many doctors are very reluctant to prescribe medications. This means that in acute stages, children may be in unrelieved pain that is difficult to bear.

2. Few child-centered treatment options

Again, most chronic pain treatment options are designed for adults. Even counselors for children are few and far between and often very difficult to find. Once a counselor is located, the wait for an appointment may stretch into months. The Mayo Clinic is one option, though they cannot possibly serve the estimated 15 to 20% of children and young adults suffering from chronic pain.

3. Difficulty expressing themselves

For young children especially, expressing the type, location, and intensity of chronic pain can be difficult. This may result in children who are suffering silently. Children in pain may also express themselves in other ways, such as through behavior (tantrums, anger), changes in sleep (difficulty falling or staying asleep), and changes in appetite.

Families of children in pain need to be especially vigilant to read other signs of pain.

The impact of chronic pain on the family

Chronic pain’s impact on families cannot be underestimated. Many families feel incapable of dealing with the complexity of treatments or don’t understand that there may be options. There are a few ways that families can cope.

Recognize that it is hard: Families of kids with chronic pain need to cut themselves some slack. Chronic pain treatment is a marathon, not a sprint, and parents and siblings aren’t perfect. It is important to also understand that chronic pain in children can bring up many different issues for families – fear, uncertainty, helplessness. Families of children in chronic pain should also be working with a counselor to work through their own emotions.

Understand that the child is not the illness: Consumed by doctor’s appointments and treatment regimens it can be easy to forget that the kid in pain is not their illness. Families need to make time to discover and nurture the gifts and interests of all family members, including the child in pain.

Build self-awareness while validating the struggle: Kids with chronic pain may not feel like moving around, even if that’s what the doctor recommends. Validating the struggle while building self-awareness is a powerful step to help kids develop persistence and resilience. This can be a simple statement like, “I know that you are hurting and tired today. Remember last week when you started the day like that and went to see your friends and felt better? Maybe we can try that today to see if it works. I know it’s tough; let’s figure out a way to make it work.”

Practice self-care: Families need to care for themselves when caring for kids with chronic pain. Compassion fatigue is a real syndrome that can result in serious health problems for caregivers. Taking time to practice self-care can rejuvenate and help keep the whole family healthier.

Veronica’s story of coordinated care highlights the importance of a strong family support system and comprehensive treatments that get everyone involved. If there is a child with chronic pain in your family, we’d love to hear your story in the comments.

8 Comments

Christina Gonzalez June 30, 2016 at 9:39 pm

Hi, I’m 17 and have had chronic pain my whole life. I was 11 months old, I would point to my leg and tell my mom, ” owwie, leg! ” I had severe pain for as long as I can remember, doctors never believed me because ” children tend to believe things that aren’t true ” then, on October 6th, 2014, I got my first diagnosis of Multiple Sclerosis. Now, at 17 I have many chronic diseases. Such as MS, Fibromyalgia, AMPS – amplified musculoskeletal pain syndrome, CRPS – complex regional pain syndrome, and epilepsy. I’m in severe pain all day long and I don’t understand how this is a childhood. Animals make me stay strong

Pain Doctor July 2, 2016 at 1:01 pm

Hi Christina — Thank you so much for sharing your story here! We’re glad to hear animals are helping you with your journey. Wishing you less pain!

Ricki Hallock July 4, 2016 at 11:52 am

Hi, I’m now 37 but I’ve had chronic illness my entire life!! My first memories were of my mom having to stay up til all hours of the night EVERY NIGHT rubbing my legs bcuz they hurt so bad I couldn’t sleep!! They were wrote off as “growing pains” by our Dr. But trust me I’m not tall enuf for them to have been growing pains every night of my life!! This continued on into my teens and then it started affecting other areas of my body. Every day I had something else tensor bandaged up and it was always something different my wrist, my knee, my ankle. I was constantly in my Dr.s office and was consistently told it was in my head! Finally when I was 17 they came out with this fibromyalgia and that’s what they said I had. When I was 23 I went to a specialist and I registered for 15/18 pressure points for fibromyalgia!! I was also diagnosed with arthritis in my joints! When I was 28 I herniated a disc in my back, 2 yrs later I went in for my first back surgery. At 32, I was diagnosed with degenerative arthritis in my back when they had to do my 2nd back surgery and not even 12hrs out of it, it was messed up(long story) and witching 6mths I was back in for my 3rd back surgery in which they fused it! However my surgeon has had me on limited activities bcuz he is scared that the discs it is fused to will also herniate if I move wrong or too fast!! At 35 I got really sick and almost died 4 times!! I landed in the hospital with a raging kidney infection which they treated but sent me home still really sick! My family Dr. tested me for anything and everything he could think of but found nothing!! Between Jan-June I lost 40-60lbs my skin hung from bone and turned gray, my cheeks and stomach indented, I looked and smelled like death! I couldn’t eat or drink or move!! I finally dialled 911 and went to the hospital for all intents and purposes I was dead!! They finally found that I had blockage in my colon and cut 2feet out of my colon!! I spent almost a month in the hospital… I came home and still I felt unwell!! Again I went to my Dr. and said they did not fix the problem!! He said they must have, this must b in your head!! On New Year’s Eve once again almost dead I called 911 and had them take me to the hospital where they discovered I had another blockage!! Not only that but my hemoglobin level was at 68! The Dr. was shocked that I was even still breathing!! Well they got my blood level back up then it dropped again but where did the blood go?! I wasn’t bleeding anywhere??!! Thus the discovery of one of my main issues!! I was diagnosed with Crohn’s, but now I have this other issue and I have another issue as well. My potassium levels tank outta nowhere!! They thought it was my diet but 3wks of being on hospital food and boom my potassium tanked!! Well these issues had nothing to do with the Crohn’s!! So now finally I’ve got all my issues out there where a Dr. can see them! Or so I thought… I’ve been being treated for Crohn’s and they told me it’s actually calmed down a lot! So why don’t I FEEL any better?? I still get wicked stomach cramps and I don’t wanna move off my bed! Some days I lay in bed in such pain I actually scream!! I’ve had a hysterectomy but they left an ovary so I wouldn’t have to b on meds for the rest of my life… Anyhow… The point is my ENTIRE family has written me off!! For being too lazy to work!! Saying my health problems are all in my head!! Or at least they had until my dad walked in the hospital last June and saw me… That’s when he got the wake up call!! I was actually almost dead!!

Pain Doctor July 5, 2016 at 6:51 pm

Hi Ricki — Thank you so, so much for sharing your story here. A life of pain is a burden no one should have to live with. We’re sending you good thoughts and wishing for less pain. If you haven’t already, we encourage you to check out our chronic pain support group, where you can find more people who know it means like to live with pain and can offer advice and support: https://www.facebook.com/groups/11864244228/.

Yara Rivera June 14, 2017 at 8:47 am

Hello, my name is Yara. My 8 year old daughter Isabella was recently diagnose in the Boston Children’s hospital with Amplified musculoskeletal pain syndrome. We are from Puerto Rico, here they don’t know much about this condition. We are learning day by day to deal with this. It has been very difficult for her and for us as a family. I have been reading a lot to see how I can raise awareness here in the island. I’m sure they are more kids suffering from this without getting any help or with a wrong diagnostic. If you have any more information for me to keep learning please send it to me. Thank you for sharing your story. God bless you.

Please could you let me know if there are any help groups or forums for amplified pain syndrome. My 11 year old daughter has been diagnosed with this and life is quite challenging for us. We live in the UK and I am finding information about this syndrome difficult. I have concerns about her transition into secondary school as at times she is dependent on a wheelchair and am not sure how she will manage this in a more independent setting. Best wishes Jane